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This, is Queenscliff

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I’m thinking it might be relevant for followers to see where I moved to. So, here you go – welcome to Queenscliff!

It has been a huge transition (by now you’ve heard about it) but moving from my previous (20+year) city life to this seaside town is quite a change!

Kind of forced sea-change! Continue Reading

Self Management: Acceptance, Commitment & Sacrifice

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Elizabeth Banfield_written within
(Image: Written Within* by Elizabeth Banfield hand burnished linocut, kozo tissue, thread ©2017)

My sacral stim and I have known each other for a full 17 months now, so I felt it was the right time to make some comments and reflect, again, on this self management business.

Yes, the sacral stim is making a huge difference.

Now remember – I’m talking about my pelvis, my pain experience, my brain, my nervous system and my genes

Three (of my never-ending) realisations for living with chronic pain are that I have to:

  • accept that my life and I have changed – forever
  • commit to a new way of living, and
  • make the sacrifices that it takes to self manage

Chronic pain really blurs life so it takes time to realise the impact (positive or negative) of any treatment or change of activity.

Time seems shorter for me. When I compare myself with full capacity humans, I feel I achieve less and the physical cost is greater.

Not the best value! But it’s what I can get.

The Sacral Stim

The good news is: Continue Reading

God, I’ve founded a better way to do things

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No, I’m not about to preach about finding God. I mean the other God – your health professional.

I’ve had many dilemmas trying to manage chronic pain.

The obvious ones relate to seeking appropriate treatment and managing life – money, bills, commitments, family, friends… if you’re reading this, you probably know how that paragraph ends.

But I’ve had an additional, personally inflicted dilemma and that’s to make something of my situation and further still, have the experience validated.

I don’t think we can control self inflicted dilemmas. In fact it’s hardly a dilemma, it’s more like a personal trait that I owned long before my injury.

pudendalnerve.com.au‘s vision is focused on positivity and I’ve adhered to my mission to help others with chronic pain (and injured workers) through my personal experience.

I’ve taken that one step further by founding Pain Train – an online health record website for people exactly like me.

Embracing the health care system’s push for self managed care

I find it difficult to sit still (pun intended), when I can see a way to make a change for the better and to help others. In the case of Pain Train, it was actually creating something that didn’t even exist in the chronic pain world.

The Gods we look upto had nothing to offer in this area – it didn’t exist.

So I repeated my story, as you did/do a few million times during the few million appointments.

Exhausting! Not to mention impossible.

How are patients and their teams meant to manage (you know the thought, surely God doesn’t expect me to repeat myself, again!)?

Yes, the Gods do expect you to repeat yourself. How else can they help you?

Well, there’s an easier way for both of you/us! Continue Reading

Patient to Practitioner Access: Too Much?

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It all started with emails. I bet most medical professionals felt alarmed as email communication began with patients.

Wasn’t the existing scenario suitable enough? Call the receptionist – make several attempts to get through, rattle off suitable dates, wait for that day to come around, get to the waiting room, sit, sit and then finally release that conversation that’s been swirling in your head… if that’s even possible in the allocated 15 minutes.

I’m sure some medical professionals still appreciate and stick by this scenario. I know quite a few that do.

Isn’t life short enough?

Thankfully, my pain specialist (Dr Nick Christelis), and his team have progressed further, throwing their whole practice (Vicpain) on as many social media platforms as they can. Continue Reading

Dr Susie Gronski: How One Artist Used Her Hurting Strings To Stitch Back Her Life

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I can’t recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain experience.

Dr Susie really gets pelvic health issues and especially for males – oh hoorah, finally someone to help the boys!

Don’t hesitate to organise an online skype session, Dr Susie has a load of support and experience on offer.

(Post written by Dr. Susie Gronski, DPT, PRPC. Doctor of Physical Therapy. Expert pelvic health advice without the jargon)

Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers.

She’s also the author of our newest blog post – How One Artist Used Her Hurting Strings To Stitch Back Her Life.

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Encouraging Self Management

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(Written by me, the founder of {Pain}Train)

That’s easier said than done.

When I first had my accident in 2007 and literally landed in chronic pain, the last thing I expected to hear at any appointment was that I had to manage and coordinate my own treatment.

It was confusing when I was asked what treatment I thought would be best for me to try next – wasn’t the professional meant to guide me?

But a decade later I now finally realise that I was driving my pain management and it was in fact my direction and feedback – from my unique pain experience that was making the difference.

Without the patient reporting their exact experience – which we now know is unique – there’s no way to plan or move forward.

I can’t imagine the complexity a professional faces when trying to help a patient who is unable to articulate their pain experience. But I know this is the general scenario and I know this because I experienced the difficulty of remembering, talking, thinking, documenting, reporting and navigating each minute while living with chronic pain. Continue Reading

ADF campaign: Losing Yourself in Pain Medication

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The Alcohol & Drug Foundation (ADF) has been working to enhance awareness about the way Australians consume pain killers.

My understanding of the campaign is that the ADF in no way suggests pain killers are not necessary – many Australians require their medication to manage their health issues – but patients should investigate other options and be informed about the effects of taking these medications long-term. They should not be recommended as a first resort.

Within a few months of taking chronic pain medications, I realised it was not a long term plan for me and was thank full to be able to find other forms of treatment that could help me survive chronic pain day-to-day.

Mamamia: My experience with medication

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Mamamia_0794

It’s time we talk about the addiction killing more Australians than heroin and ice combined.

(Excerpt from mamamia.com.au. Story by Caitlin Bishop)

Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.

“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia. 

Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes. Continue Reading

Suck it up and smile – it’s holiday time!

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Yippee!! Not! It’s too hard.

I was dreading Christmas – like I usually do. And I’m dreading New Year’s eve and day – as I usually do. And even though I would regard myself as ‘experienced’ and loaded with the best treatment possible, there seems to be no way of avoiding pain during holiday time.

Suck it up!? Um…,

No!

And that word my dear readers, is how I manage this holiday time.

I’ve learned it so well now it just rrrrrrrolls off my tongue and I loooove it because it’s always there for me and it keeps me HAAAAAPPY.

Here it is again:

Noooooooo

And with that comes,

I’m sorry, I can’t do ‘that’

With the truth being, I definitely can do ‘that’ but I have chosen (well sort of voluntarily obviously as I didn’t plan this bizarre accident) not to, because I don’t want the pain levels during – and after – I do the ‘that’.

There.

But of course it isn’t so easy. There are a few sad bits that come with ‘no’. Continue Reading

Mark of hope?

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_ Mark of hope_Soula Mantalvanos QGW Lettered print exchangeQueenscliff Gallery & Workshop (QG&W) organised the Lettered print exchange.

A Print Exchange is when artists submit works to a set theme and they exchange each other’s work, each artist keeping a complete portfolio.

An exhibition is held and only a few of the editions are for sale.
Continue Reading

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

Pain Train my online health record

Pain Train my online health record

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